The gift of self awareness

Among Simon's difficulties are some great talents: He started reading at 3 years old, he knocks wiffle balls over the fence with regularity, he has a knack for electronics. One of the skills that will serve him the best, though, isn't as easy to see; Simon is remarkably self-aware. 

He was telling Lorelei about the softball game we were going to watch, and reached a point where he started looking around and stopped talking. I asked if he was confused, and he replied, quite plainly, that he was just distracted. 

Jumping on the bed one afternoon, he gleefully announced, "this is getting all my anger out!" Simon tells us when he needs a break from being active, sometimes hilariously declaring that it's time for a commercial break, or just  wiping his forehead and settling down for a moment. He has told me that a place is too loud and too busy and we need to leave. In fits of anger or distress he has asked for a book to be read to him, knowing "that will make me feel better." After one particular wild moment of jumping, bouncing, and crashing, he settled down into his massive pile of pillows, cushions, and blankets and said "that was a good sensory activity." 

Of course, he often can't access this skill in the worst of meltdowns, refusing his weighted blanket, his comfort items, jumping, and being squished, instead continuing to scream, kick, and shove. He rebels against putting his headphones on in public, even when he acknowledges it's too loud. But at four years old, as he describes feeling his anger leave as he rocks in a chair listening to music, I have great hope for him, that as his body and brain mature, he'll be increasingly able to use his insight into himself to regulate, adapt, and manage his own challenges. We couldn't ask for a more valuable gift for our sensory son. 

My Home Planet

My body is weird. I've discovered, since I've connected with others that have Fibromyalgia, that my particular kind of weird body issues are actually pretty common among those with our illness. Beyond the unexplained, constant, all encompassing, and mobile pain and unending fatigue, there are other things I've always thought of as quirks that are common too. Cracking jaws, ringing ears, twitching, clumsiness, tender skin, oversensitvities: I've found many others with Fibro that have the same issues. I feel like I've finally found my home planet. I fit in so well with the natives.

I've yet to note if these oddities fade as the main symptoms, pain, fatigue, and cognitive "fog" are under control. There are so many quirks, along with so many important life things, I haven't paid attention. It is a curiosity, though, if the illness causes the weird issues, or if people with the weird issues are inclined to get the illness. Either way, it's nice to find that I'm not alone in my twitching strangeness.

Of course, more importantly, is finding people that can relate to the serious aspects of Fibromyalgia. It's hard to empathize when you don't know what it's like hurt all over. All the time. There aren't words to express the feeling, but on my home planet, we all feel that way. We get it. I can't accurately convey why I can't miss water aerobics for something fun, or why I can't stay up late and make it up the next few days. It's impossible to express just how crushing it is to have the core of your identity as a kind, giving, and smart person be challenged by a chronic illness.

This is my real grief, this loss of self. My entire life people have praised me for being nice and being smart. My one contribution to friendships is my kindness. I'm not funny, clever, or exciting. I don't tell stories well and I don't have charm. But I'm NICE. I take homemade soup to friends when they are sick, I watch their dogs, and go to events when I'm not comfortable. I make silly embroidered molecules that relate to their interests or skills and I find books that they will love. I am NICE. But since the illness kicked in, I don't have the energy to be nice. I missed a baby shower, birthdays, and an engagement celebration, and I haven't even started the planned baby gift. In the past four months I have been absent, and I worry about who I am without my kindness.

And then, there is intelligence. I didn't know that Fibromyalgia comes with "Fibro Fog," this cognitive lapse that comes with the pain flares. I panicked when it happened to me, the morning I woke up unable to finish a sentence mentally or orally. That issue we all have of not being able to think of a word dominated my speech: it was nearly constant. I dribbled water down my shirt when I took a drink. I got it up my nose the next time. I stared into space, vacant of eye and mind. And I panicked. I convinced myself what I had was not Fibro, but MS. I worried it would be permanent and I would never think straight again. I've since learned that while the fog can last a long time in a really bad flare, it doesn't last forever. What does last forever is the increased brain deterioration that happens in Fibroymaglia patients. Thank you jerk Physical Therapist, I'm not sure I needed to know that tidbit. This smart person who advanced rapidly through school and impressed employers with her intelligence is going to lose it, periodically, and more rapidly than healthy people over time.

Who will I be when I can't physically do the nice things I do for people, and when my intelligence fades? What is left of me when the foundation of my self is lost?

It's a wretched grief, but at least it is one that I know others know deeply, and while they can't fix it, at least they can honestly say: I'm sorry, I understand.

The Dysregulation of Simon Ham

Teacher Sam told us on Monday afternoon that they had talked about keeping hands off of other people's faces in school today. Simon had been poking other children in the face the way he does it to us. It's affectionate and silly sometimes and sensory compulsion at others. Another moment this week he was in great distress, in the middle of a total meltdown, begging Bob to pick him. He rested his head on Bob's shoulder for a moment, then started aggressively jabbing him in the face. When told to stop, Simon screamed and started flailing. He wanted connection and comfort, but he was so overloaded, he couldn't take it in with face jabbing.

He's had a meltdown nearly every night, flailing, throwing, kicking, and screaming. Screaming so loud that ours ring, even though we plug them. There have been a few things out of the ordinary, a trip to the movies, a few missed quiet times, a shared dinner that pushed his bedtime back half an hour. He's also oozing mucus. Bob thinks it's a little cold. I think it's allergies. Either way, he's coughing, sneezing, not sleeping as well, and probably doesn't feel too great. Slight shift in schedule and a sinus explosion might be enough to do this to him. But it might not. There are many possibilities, some I need insight for, if it's something new they're trying at school that is frustrating, if the classroom or schedule have been rearranged. It could be a reaction to my struggles with Fibromyalgia, seeing how I am in pain, sad, frustrated, and very tired.

What I'm really worried about is that he notices how his classmates are starting to react to him. A month ago, when I dropped the critter off at school, he got too close to the face of a friend, called her something silly, and they both laughed, though she definitely backed up. This week, she looked at him and turned away, not responding at all. Two girls were chasing each other in the hallway, giggling. Simon ran over, joined their little circuit, and giggled with wiggly fingers, like pretend tickling, but not actual touching. They stopped, fell silent, and returned to their parents. Hopefully he's oblivious, like I was as a kid, but the level of sensitivity to emotions from others leaves me worried he gets it. Simon feels the rejection and recognizes that those looks say he's different, odd, and too much to handle.

So we refocus on what we can control - strict schedule, remove electronics, keep the house mellow, and activities infrequent. Pump him full of fluids, perk myself up as best I can in front of him, and hope.

Giveaways Galore

There are a lot of great giveaways going on for Autism Awareness Month. Over at http://www.theimum.com/2012/04/dreamcatcher-weighted-blanket-review-and-giveaway theimum, they are featuring a review and giveaway for a Dream Catcher Weighted Blanket, something I personally would benefit from with my Fibromyalgia pain. I've loved deep pressure since I was little, and now I know why. :)

I like this dentist occassion

When Head Start started nagging us about finishing our enrollment paperwork, we got really anxious. The form for the doctor I could send in easily. It was the blue form that made me worry. The blue form was for the dentist.

Though four and a half and with one minor tooth injury, Simon had never been to the dentist. He balked at the doctor's office, requiring cajoling, bribing, and major distracting to get him through a basic check up. He has spit on us, thrown his toothbrush at us, slapped, head-butted, and kicked us on occasions we've tried to brush his teeth or show him how to do it himself. And now we had to take him to the dentist, where he would have to lay back in a vestibularly uncomfortable way, have bright lights pointed at him, and loud, hard things shoved in his mouth. We hoped to get out of there without any one being bitten.

I made him a social story, and we got ready to break the news to him. Simon wept. And whined. And begged me not to "let" him go to the dentist. He threw his story. I left the story where he could get it and didn't mention the D word again. As he remembered it, he would cry and whine all over again. Simon kept asking when he was going, so I wrote it on the calendar. April 9th, dentist.

One afternoon close to the big day, he was reviewing the calendar for his days off of school and paused on April 9th. I braced myself, ready to reassure and comfort. Simon turned to me and said, "the dentist has special tools. They aren't scary. They tickle!" Almost word for word, he spouted a line from the social story. He was chipper. He even smiled. Despite my shock and delight, I stayed neutral, affirming the message. Simon gets very distressed when we're too happy about a positive change in his behavior, so I had to wait until he was out of sight to have a little moment of victory.

The day arrived, and Simon willingly readied himself for the visit. He demanded he brush his teeth before his quiet time so that he wouldn't miss the dentist. He asked impatiently on the drive where the dentist was. We walked in the doors, and he started looking for the waiting room and the exam room, as he remembered them from his little dentist book.

Despite momentary panic when the receptionist couldn't find his appointment, then told us we'd been marked as no-shows before our appointment time even happened, we got called through door to the patient care area. An absolutely amazing dental hygienist met us and led Simon through a very successful visit. She was patient, calm, and upbeat, praising Simon for being big, brave, and a good listener. Praise he'll take from an adult that is not his parent. He got anxious when she showed him the straw that sucks everything out of your mouth, and started to resist when she had him try it out. They moved on, and though his breathing was rapid, his body restless, and his little face tired and nervous, he had his teeth brushed and x-rays taken. At one point in the middle of the cleaning, he even said "I like this dentist occasion." From weeping and begging to expressing fondness for the dentist office. This is one huge relief and major victory. We took our son to the dentist.

And yes, we turned in the blue form, and the Head Start office is satisfied.

Temporary Salvation in the Water

I wish mermaids were real, and that I could be one. I have immense freedom in the water. I feel no pain, moving is simple and easy, my tension eases and my mind clears. I'd like to build some Suessical contraption that would cart me around in tub of water, working, moving, living immersed. Instead, I go to water aerobics. 

In this week of increased pain and my first long lasting experience with "fibrofog," the cognitive trouble that occurs with fibromyalgia, I've found that water aerobics is good even for the fog. Tuesday night I pushed myself in the water, working a little harder and faster under water. I felt good afterwards, as I always do, with quicker, pain free movement, relaxed shoulders, and a pain free head. I could also recall with greater ability common words that I need to communicate. I could remember from one moment to the next what I had been thinking, doing, and saying. I completed sentences without prompting. 

Of course, when I woke up Wednesday morning, the pain was back, the words were gone, my memory was failing me, and my sentences were hard to finish. Today is just as bad, and possibly worse. On my way in to work, through half finished thoughts, I convinced myself I had MS. I fired off a message to my MD, to confirm that all of this is a normal Fibro symptom and calm my hypochondriatic mind. 

I wonder what caused this flair of pain and mental dysfunction, but it's hard enough to recall where I left my cereal. Perhaps I should journal environment and activity and symptoms, to see if there is cause and effect. We need to do that for Simon as well, his recent morning of total meltdown and extreme dysregulation must have come from somewhere. At the moment, though, I can barely stand the thought of staying awake, let alone starting two daily logs of input and symptoms. Perhaps after my temporary salvation in the water tonight, I can use my moments of clarity to work on this.